31 July 2009

Update 4 on Jennal

This is the 4th update to my blog about my niece, Jennal, and what she's been going through. Here's a link back to the 3rd update on her condition. If you haven't been following this story, please read the original blog post.

As I mentioned in my 3rd update on her condition, the second procedure that was performed on Jennal, which was the full hemispherectomy, was performed without incident. When I returned Thursday evening, my sister had left for her OB/GYN appointment. Thankfully, the twins are doing OK; they're moving around and everything her doctor told her seemed to be good, so far.

So getting back to Jennal, her father was with her. She woke up when she heard me speaking with him. She was extremely grouchy and yelled at us for waking her up, so we had to whisper but even then, she could tell that we were talking about her.

Jennal was in and out throughout most of the night. She did manage to fall into a deep sleep a few times (we could tell when from her vitals -- how frequently and how deep her breaths were, and her heartrate, etc). I was sitting by her bed side and, throughout most of the night, she was holding onto my hand. She did not want me standing beside the bed -- she didn't want anyone standing next to the bed, in fact.

Whenever the nurse would come to change an IV bag or do something, she would wake up and say, "Excuse me I don't want that." It didn't matter what that "that" was -- Jennal was done having things done to her. It was both adorable and heartbreaking all at the same time.

Jennal told me that she wanted me to take her home. I asked if she wanted to come to my house and she said no. She wanted to go to her house, but she wanted me to take her there and go with her.

As for her vitals, they're almost normal for a child of her age. The only thing that really is worrisome is the temperature. At one point during the night it came back down to normal but then in the morning it was up again, over 101. Additionally, after viewing the monitor for such an extended period of time, I came to see that Jennal's heart is not beating regularly. She has an irregular heart beat, which the doctors knew about. It's like she'll have three regular beats and then it'll skip for one or two beats, then she has three short but quick beats, then it'll go back to regular for a few beats, and then the cycle repeats. I'm very concerned over this, as I'd never had the time to study it on the monitor before.

There were times last night that I tried to leave Jennal's side but she just gripped my hand when I tried to pull away -- she didn't say anything but her intent was clear; she didn't want me going anywhere. When I finally had to leave this morning to get some rest, after the doctors had done some poking and prodding, I heard her say, "Don't leave Uncle Peter." Although it broke my heart, I did have to leave; otherwise, I would be of no use to her and my sister tonight. My sister will be here tonight alone, with me, just as last night it was Jennal's father who was there alone, with me. My being there enabled him to get some rest, just as my being there tonight will enable my sister to get some rest. And that's why I've been there this entire time, to enable both of them to get some rest.

I'm a nocturnal creature; my sister knows this. So the secondary or tertiary reason for my being here (primary being to be there for my niece, secondary to be there for my sister) is to give my sister and her fiancé a break so that they can get some rest, as they know I'll watch over Jennal with at least as much--or more--vigilance than they would.

The first two years of her life, Jennal and I lived together. As such, we formed a special bond. Jennal first will turn to my sister--her mother. If she's unavailable and it's a choice between her father and me, for some reason Jennal turns to me. I don't know how she knows it but I think she knows that I'm closer to her mother by relation than her father. Maybe it's that Jennal and I look so much alike -- you would not be able to tell our baby pictures apart.

We're waiting on the results of the sedated MRI that Jennal had to undergo this morning. I guess those will come in tomorrow or on Monday. So now I'm going to grab something to eat and head back to hospital to watch over a very cranky Jennal.

Oh, one thing I wanted to mention is that Jennal doesn't want anyone going near her or standing over her--it's as if she's scared that they're going to do something to her, perform another procedure, or move her (which causes her pain), or something. She also picks up on any medical words and if you mention anything medical around her, she'll say, "Excuse me but I don't want [that]." (and actually if she has trouble pronouncing "that" then she'll actually just say, "that."

It's really quite adorable, humorous, and at the same time it's so heartbreaking because I can feel my niece's pain, frustration, and anxiety. She wants to go home and have people stop doing things to her, but things must be done to her (medically) in order to ensure that she recovers properly and in the best possible way.

They're talking about stepping her down from ICU to a high-level care bed in order to start physical therapy with her, as she's literally just been lying in bed since Monday without moving. She is not going to like that at all -- people trying to get her to move around and what not. As it stands now, if you ask her to do something she'll tell you that she doesn't want to do it, no matter what it is (unless it's go home). Eat, drink, sit up, move her arm, move her leg, take her temperature, open her eyes, close her eyes, wiggle her toes, laugh, watch TV, play with Barney (one of her favourite television characters) -- she doesn't want to do any of those things.

I can only imagine the level of pain that she's in now. When she's feeling a bit better, I'm going to have to let her feel the ridge on my head, from where my head was cracked open when I had my automobile accident. I'll show her this and let her feel it, and tell her that I have a head boo-boo, too, and I got all better. Maybe if she sees that I got better from my head boo-boo, it will make her feel less anxious and more hopeful that things will be OK for her. We can only hope, right?

Finally, I just wanted to say that I would not have been able to do this, to be here for my niece and my sister/brother-in-law, without all of the wonderful support that I have received from all of you on Twitter and Facebook. Every time I'm about to give in to my Depression, somebody sends me a tweet, or comments on my Facebook status, and that short message gives me the strength and energy to continue plodding along. I can tell you that my sister and brother-in-law feel the same way from the messages that are left on their Facebook profiles.

So please continue directing your healing thoughts, good energies, and prayers for Jennal. And thank you all so much for your tweets of support. I can't get through this without you! I'll try to get some new pictures of Jennal for you all to see as soon as my sister can sneak them...

30 July 2009

Update 3 on Jennal

This is the 3rd update to my blog about my niece, Jennal, and what she's been going through. Here's a link back to the 2nd update on her condition. If you haven't been following this story, please read the original blog post.

My sister, her fiancé (Jennal's father), and I were there all morning right up to the point where she was taken into surgery. She was sleeping on and off. Jennal wanted her mother right next to her and me by her side. Her father came over but she actually pushed him away. She was extremely grouchy and cranky, as she knew what was coming. She kept begging us to take her home, and not let her go back. She kept saying that she didn't want another trip. Whenever the nurses would come over and and say something medical, she would use that word -- no matter what it was -- and say that she didn't want it, repeating it over and over.

For example, one of the nurses said that they needed to take an oxygen tank with the bed when they transported her, so Jennal started crying, "I don't want the oxygen tank" over and over and over. It truly was heartbreaking to be there with her. Her mother and I continued to comfort her, telling her that everything was going to be OK but at time the nurses' continued conversation about things in front of Jennal made it difficult. One of the nurses didn't think that Jennal knew what was going on but--trust me--she was fully aware that she was going in for another surgery, and Jennal was experiencing a great deal of anxiety over that, as she feared much more pain, etc.

Jennal wanted my sister in the bed with her, and my sister did her best to comply. Jennal didn't want me to touch her but she did want me by her side; she didn't want to see her father, and that really surprised me. She was extremely cranky and feared what was coming. She really did not want to be taken anywhere except home, which is what she kept repeating. When they took her away to go down to surgery, they took her in her bed, with her mother by her side. I stayed in the room, watching her leave, crying that she didn't want to go on the trip.

I truly wish there was a way to control Jennal's seizure without resorting to this horrific procedure. The surgeon came up before hand to speak with Jennal's parents, and asked if we had any questions. My sister had already done the drilling, long before they started these procedures this week, back when they had talked about the possibility of doing it. (They had discussed the possibility of this procedure back in the spring, but actually only decided to perform it last week.) I asked approximately how long it would take and if they foresaw any complications, and was advised that it was an approximately four-hour-long procedure and that they foresaw no complications.

Around 3:00pm EDT, the surgeon came out and informed us that the procedure was complete and that there were no complications. He said that everything went smoothly and according to plan. Shortly thereafter, Jennal was wheeled in her bed back to the pediatric ICU room, which now had three other patients in it. She was still under the effects of the anesthesia, but she was mumbling something about turning off the light and not being able to open her eyes. She looked extremely swollen--much more so than from the previous surgery. I guess having two brain surgeries in the span of four days will do that to you.

At that point, because I hadn't slept since -- Wednesday morning some time (my usual sleeping pattern is to be up at night and awake during the daytime, so I fall asleep around 6-8am or so), I returned to the hotel room that the hospital was providing (my sister was paying for a small portion of the hotel room fee, and the hotel is located just a few blocks from the hospital) and went to sleep. I knew that Jennal would mostly be sleeping for quite some time, and she didn't acknowledge either my presence or her mother's presence, so I felt it was OK to leave her for a while and get some much-needed rest.

My sister had an OB/GYN appointment this evening, which she had to keep, as close monitoring of her pregnancy (she recently found out that she's in her 2nd trimester and pregnant with twins of all things). I've been in contact with her father via SMS and he said that she's still out of it, under the effects of the anesthesia. When my sister returns from her OB/GYN appointment, I'll return to the hospital with her and stay with her, as her father has a prior engagement that he is obliged to keep and cannot get out of. Since Jennal was pushing her father away (which was heartbreaking for me to see--as I'm sure it was for my sister and him as well), I think she'll be OK with just my sister and me there.

As for Jennal's vitals, her heart rate was still a bit elevated but not nearly as much as it was when she came out of surgery the first time; we'll see how it is later this evening, when the anesthesia wears off a bit more. The blood pressure monitor via the IV was high, but the blood pressure monitor via the cuff was normal. The doctors said that they trusted what the cuff blood pressure was more so than the IV monitor, as that tended to be unreliable.

So all in all, Jennal seemed OK, except for that fact that she was very pissed off at the fact of having to undergo a second procedure. At least now, for the time being, she won't have to undergo any more procedures like this, or any surgeries in the near future. I do know that she will have to undergo surgery for her legs to correct the bone growth (because of her stroke, her muscles aren't pulling on the bones in her legs with enough strength so the bones in her right leg aren't growing properly). But that's something for the future, and not nearly as life-threatening as what she's going through now.

I'll keep everyone updated via the blog and my Tweets on Twitter. If you're not already doing so, I do tweet about Jennal's status and what's going on via my Twitter account. You can read about that at http://twitter.com/NiteStar

Jennal, her parents, and I (along with the rest of our family) have received so much support via friends who are commenting on-line, and we would just like to take this opportunity to thank all of you for your previous, present, and continued prayers, thoughts, and healing energies. I don't think we could have gotten through this without all of the support that has been given, and the comments and tweets made via Facebook and Twitter. Please keep up the healing thoughts & energies, and your prayers. THANK YOU SO MUCH!

29 July 2009

Update 2 on Jennal

See Update #1 for previous information as to Jennal's condition and also read the original post about why Jennal is undergoing this rare surgery (approximately one-hundred hemispherectomies are performed world-wide each year).

OK, so the fever has come down to a normal level now. Jennal's heart rate is still elevated, however; when she's sleeping it's around 120-130 and when awake it's around 140-150. That's about double to 2.5 times what it should be, but it's better than triple and quadruple, which is what it had been running.

So far, she hasn't had any more seizures. The seizure-like activity that I had reported in Update 1 were firings from her brain that caused the muscle contractions throughout her body. I had stated that this was the beginning of her seizure, and that's not entirely accurate. This physical reaction (her muscles jumping all throughout her body) is in response to firings from the neurons in her brain, in response to the first surgery. If she hadn't woken up and the firings continued, it could have led to Jennal having a seizure. So while it wasn't the beginning of a seizure, it is something that's cause for alarm because it can lead to a seizure.

Apparently, Jennal has been having these reactions both while she sleeping and while she's awake. As such, the doctors have scheduled the complete hemispherectomy (removal of the entire left hemisphere of her brain) for tomorrow (Thursday) morning.

To make matters worse, my sister has an OB/GYN appointment tomorrow morning (my sister just discovered that she's pregnant with twins and already is in her second trimester) and Jennal's father has a prior obligation Friday morning. As such, my sister is freaking out about not being able to be there in the 24-48 hours after this second surgery, which is the most important time period.

Additionally, this also means that there will be a third surgery, to remove the electrodes from her brain that are being used to monitor her brain activity.

Here's a picture of my niece before she went into surgery on Monday:

And here's a photo of her after surgery. You can even see the look of anger and pain on her face, even though she's sleeping. I commented to my family and friends that she looked "mightily pissed off" while she slept:

The tube and bottle you see by the side of her head is for drainage of fluids from her brain, which is important. As can be seen, her entire head was wrapped in gauze. When she indicated to me on Tuesday morning that she was in pain, she used her left arm to point to near her hear, near where the drainage bottle is located.

She actually doesn't look as angry and/or in pain in this photograph as she had most of the time I spent with her.

When I'm not in the ICU with my niece and sister, I'm somewhere nearby -- either in the waiting room or in the hotel room that my sister has. I can't leave the region given the circumstances, until my niece makes it out of ICU. As previously stated, she is more at ease when she sees me there, as evidenced by her reduced heart rate and blood pressure, and her ability to actually fall into a deep sleep.

28 July 2009

Update 1 on Jennal

This is the first update on my niece, Jennal. It is being made after her partial hemispherectomy, which I described in this blog post.

I just came back from the hospital. I got there around 4am, after having drinks with a friend I haven't seen in over a year. It was really good to see her -- took my mind off things for a while. I actually had two amaretto sours, and I almost never have two drinks in a night. But I think I needed it tonight, plus we were eating so it wasn't all that bad.

Anyway, I got back to the hospital around 4:30am and broke all the rules. Scooted past security (just look like you know where you're going and no one pays you any mind). Went up and got myself into pediatric ICU. Jennal's father was sleeping in a chair next to her bed; I didn't see my sister anywhere so I had assumed she went back to the hotel to sleep. Jennal was WIDE awake. I bent down next to her and asked if she was OK. She told me no. I asked what was wrong, she said she hurt. I asked her where and she pointed to her head, which is wrapped completely in gauze. I immediately got the call button and pushed it for the nurse, who came within seconds.

I told the nurse that my niece was in a lot of pain (I had asked her if the pain was a little or a lot), and that her heart rate was elevated. When I came in her heart rate was around 145, which is lower than what it had been when I had last seen her. The nurse responded with "well it was lower when she was sleeping" -- I just glared at her, so she said she would get something for the pain.

Jennal in pain trying to rest in bed after her hemispherectomy

Initially, the nurse tried to push it through an IV line in her arm but Jennal shriked in pain. I asked if it couldn't be added to the IV as a drip or something, and the nurse finally was able to administer some pain medication.

I sat there talking with her. I was told (once) that only one person was allowed to stay, and Jennal's father was already there. I told her I was getting ready to leave and she asked where I was going and why I was leaving -- which was a good sign (in my eyes) as it was evidence of my "old" niece. When I told her I had to leave she said she didn't want me to go so I stayed, again, breaking the rules. When I told her I would stay, she seemed to calm down a little bit -- her heart rate slowed to about 130 and her breathing became more regular.

Jennal's dad had awakened when I came in, and told me that she he had only just then gone to sleep because Jennal refused to go to sleep. This was in evidence, of course, because I could see from the hallway that she was wide awake, even before I had entered the room. In any event, I stayed for about an hour or two. She finally started drifting off to sleep.

However, when she would seem to drift off, she would start to seize (I noticed her body start to jump violently) but then she would wake up. At one point she told me to stop shaking her awake and to let her sleep -- but I wasn't. It was her going into a seizure that had awoken her, and it stopped when she woke up (or at least it appeared to stop when she woke up). Whenever she would wake up, she would check to see if her father and I were still there, then close her eyes again and start to drift off, only to repeat the cycle in a few minutes, over and over.

When it seemed that she was finally asleep, I took my leave but, before doing so, I told Jennal's nurse what was going on. She just said "OK" and went back to writing reports in her book. While I appreciate that I was allowed to stay and sit by her side, I definitely think that the day staff was much friendlier and more compassionate than the night staff.

[EDIT--6:50am] One thing that I asked the nurse about that puzzled me; they have the monitoring equipment -- electrodes attached directly to her brain and hooked up to a monitor -- to determine if she is having a seizure; however, as was evidenced by my observation of my niece's drifting off to sleep only to be awakend by her starting to seize, no one is monitoring the monitor. I asked the nurse about this and was told that only the specialist can read the signals and interpret them. I asked if there was some sort of alarm to indicate if and when Jennal was starting to seize, and was told that there was not. For someone who is in the hospital for a seizure disorder, this makes absolutely zero sense to me. [End of EDIT]

Rules be damned, there is one thing that I know for a fact: my being there makes my niece feel more comfortable and less afraid. I also helped her be in less pain. So I know that she needs me there. Maybe not 24/7 but as much as possible. And, to the best of my ability, I will be there for her. Everything else in my life can wait; there's nothing more pressing right now than the needs of a scared, sick five-year old girl who happens to be my niece, and that is the priority in my life.

I'm going to take my meds (I think I forgot to take them earlier) and go to sleep. I'll wake up when my mother's anxiety is too much for her to bear staying in the hotel room and she wants to leave -- regardless of the time. I estimate that to be around 9am, which is approximately 2.5 hours from now. Joy!

Will update later. Now that I know I can get online at the hotel, I won't be quite as worried or go through as much withdrawal from being disconnected while in the ICU.

Also, my sister snuck a picture from her phone so when I get that I'll put it up for all of you to see.

Until then, your continued energies, thoughts, and prayers are most appreciated. Please keep them up for this five-year old soldier!

27 July 2009

Healing Thoughts & Energies Requested

In a few short hours, my niece, Jennal Leann Intira Brooks, will begin procedures to undergo a partial Hemispherectomy. As can be seen from the definition,
Hemispherectomy is a surgical treatment for epilepsy in which one of the two cerebral hemispheres, which together make up the majority of the brain, is removed.
Jennal was stricken with TBI when, at only a very short two days old, she suffered from a stroke. Jennal was soon thereafter diagnosed with having Epilepsy, severe astigmatism, and impaired motor, intellectual, speech, and other bodily functions as a result from the stroke and TBI. You may wish to read about some of the previous difficulties my sister has had in getting appropriate care for Jennal.

On 29 May 2009 (two months ago), Jennal turned five years old. It's a miracle that she's still alive. Whenever she sees me, her eyes light up, and my insides turn outward and it takes all of the strength and energy I have stored up to not fall apart like a bawling baby in front of her. She is filled with such joy and love, which is a testament to how my sister and her boyfriend are raising her.

A few years ago, Jennal was diagnosed with Cerebral Palsy. A few months ago, they've discovered irregularities in her heart beat. All of this has been caused by Jennal's frequent seizures and, even though she has been heavily medicated with just about every seizure medication known to be given to children of her age, the seizures are getting worse.

As such, her doctors apparently have decided that a hemispherectomy is the best course of action at this point, as every time my niece has a seizure, her brain is deprived of much-needed oxygen and something else goes wrong. This is how she developed Cerebral Palsy.

The picture of Jennal, above, was taken last month, during her graduation from her early intervention school (which I've previously blogged about (and included an update to)), which, IMHO (and IANAL), was grossly negligent in the care of my niece, Jennal's (to wit: they left her in Epileptic Seizures for extended periods of time without checking on her or doing anything about the seizures); I wish my sister would follow my advice and sue the hell out of the school, as her medical bills continue to mount up and insurance is limited, if not already maxed out. As you can see, she wears a brace on her right arm, of which she has very limited use, and braces on both of her legs.

This second picture (to the left) shows a bit more clearly the braces on her legs; it was taken Halloween 2008.

But I digress. In a few hours, Jennal will begin the testing required for the neurosurgeons to remove a portion of her brain (that has shown no activity since the stroke when she was two days old). They will then leave in place, in her brain, detection equipment to determine whether the removal of the lower lobe of her brain (I can't recall the specific details) has improved her Epilepsy and reduced or eliminated the seizure activity. If they are not satisfied with those results, then a full anatomic hemispherectomy will be performed a week or two later (which is how long it will take them to determine whether or not the partial procedure was successful or not).

The surgery will take place at the New York University Langone Medical Center, Pediatrics Department. Your healing thoughts, energies, and (for those of you who do so) prayers will be most appreciated. Any organisations you know of who can assist (especially financially) in Jennal's condition would also greatly be of interest to my sister and me.

[EDIT]At the end of each blog post in this series about Jennal is a link to the next post, which updates on her condition. So please click on the link below to take you to the first update that I've written about Jennal. At the end of that blog posting is a link to take you to the 2nd update, and so on and so forth. Please read through until the last update posted (the blog post that doesn't have a link to the next update) to get the full story about Jennal and how she, my family, and I are coping with this precarious situation. Thank you![/EDIT]

20 July 2009

QOTD -- Dale Carnegie

I came across some really great, inspirational, soulful, and wise quotes from the great American writer, lecturer, and creative self-promoter:

"Success is getting what you want.
Happiness is wanting what you get."

"If you believe in what you are doing, then let nothing hold you up in your work. Much of the best work of the world has been done against seeming impossibilities. The thing is to get the work done."

"If you want to gather honey, don't kick over the beehive."

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all."

"Most of us have far more courage than we ever dreamed we possessed."

"People rarely succeed unless they have fun in what they are doing."

"Remember happiness doesn't depend upon who you are or what you have; it depends solely on what you think."

"The successful man will profit from his mistakes and try again in a different way."

"There are always three speeches, for every one you actually gave. The one you practiced, the one you gave, and the one you wish you gave."

"There is only one way... to get anybody to do anything. And that is by making the other person want to do it."

"We all have possibilities we don't know about. We can do things we don't even dream we can do."

"When fate hands you a lemon, make lemonade."

"When dealing with people, remember you are not dealing with creatures of logic, but creatures of emotion."

"You can close more business in two months by becoming interested in other people than you can in two years by trying to get people interested in you." (also, "You can make more friends in two months by becoming interested in other people than you can in two years by trying to get other people interested in you.")

~Dale Carnegie (1888-1955), US writer & lecturer

17 July 2009

QOTD -- Bayard Rustin

“When an individual is protesting society's refusal to acknowledge his dignity as a human being, his very act of protest confers dignity on him.”
~~Bayard Rustin, Black Civil Rights activist
who happens to be gay.

16 July 2009

I hate summer!

So, this has been my summer so far, with my Depression rearing its ugly head full-on:

During the past two weeks, I've become completely discombobulated as I had no power for around three days due to a supercell thunderstorm that hit the immediate area I live in, and then it took another 3-4 days for the Internet/cable/phone to come back up. I took some pictures, and a video during the storm itself (although it's hard to see much in the video as it was taken at night in pitch-black conditions).

A day after I got the Internet back, the f'n cord from the AC adaptor to my laptop (computer) severed to the point where the wires were no longer making contact. I was just able to log into eBay and order a replacement (for $11--thankfully) before the battery died on me, and I just received that yesterday.

So now I'm playing catch-up to nearly two weeks of being disconnected from the grid. I feel so lost. Not to mention, over 18,000 unread e-mails (not spam, actual e-mails that I have to at least glance through).

Seven years ago today, Elizabeth Zoel Frank, my grandmother who raised me, moved on to another realm. I miss her something fierce and wish she were still here with me.

Two weeks and one year ago, my grandfather joined my grandmother in her journeys in the universe. A few weeks before that, the last person I had truly strong feelings for -- the last person I had fallen in love with -- died (and I've just found out that it was perhaps by his own hand), also seven years ago.

Speaking of death, within the past few weeks, we've lost Ed McMahon, Farrah Fawcett, Mollie Sugden, and Michael Jackson among some of the more famous individuals who have graced us with their presence in this existence.

In approximately 10 days, my niece is going to have approximately 60% of her brain removed. That 60% is the portion of her brain that died when she had a stroke on the second day of her life. It is hoped that removing this dead matter in her brain will cut down on her seizures.

One of my best friend's mother landed herself in hospital at the beginning of this week. Today, she was transferred to a hospital in the Bronx for testing. My friend is just about beside himself.

I have a roommate who refuses to purchase anything for the household (cleaning supplies, paper/toiletries, light bulbs, etc.) or do any cleaning.

I leave the air-conditioning of my bedroom and feel like someone is squeezing the air out of my lungs from oppressive the humidity/heat, as well as all of the loverly pollutants in this fine Yonkers, New York air.

I wake up with more and more mosquito bites.

I'm growing out of my clothes and can't exercise (at least to the extent required so that I would be able to lose, or at least stop gaining, weight) due to the limited mobility of my lower extremities (which is due to injuries I sustained in my motor vehicle accident seven years ago).

The only people I have any interest in, romantically speaking, are either taken or not interested in me.

And it's any wonder I want to just hide away in my bed until the summer is over?